A Price Tag On Our Children…?

This is a rant.  Maybe a vent.  Not sure the difference but here it is anyway.

A colleague contacted me today asking whether I knew of someone who could help support a middle school child with autism.  The person was needed at school from arrival until the end of the day including lunch, recess, specials…you get the picture.  These positions are generally advertised on school district websites or placed on Craigslist, but this individual was looking to me for a person with experience and training in this arena.  When I asked what the position was paying, I’d like to say I was shocked but I wasn’t.  I just shook my head in disbelief (as I’ve done many times before) at the continued lack of understanding about the importance of this role.  Not to mention the pathetic compensation.

An aide for a child with special needs is like a limb.  The child can maneuver without it but not nearly as well.  And surely not well enough to compensate for whatever deficits exist.  So like a limb, it’s essential to understand how it works, its purpose…and its worth.  Hard to imagine putting a price tag on an arm but when it comes to an aide in school, that’s exactly what’s happening.  And the current price tag isn’t even close to hitting the bar.

I know all too well about school districts cutting budgets and services, that music and art departments have been eliminated, and that many school-based activities no longer exist.  I also know that educating – and this is more than academics – children requiring special supports in school is not an option but a requirement.  This means aides for many children and the role these individuals play have been undervalued for far too long.

Paying an aide $7.50, $9.00, or $11.25 per hour to teach, reteach, coach, mentor, monitor, guide, support, supervise, advocate, run interference, capture data, collaborate with teachers, and communicate with parents is insanity.  Pet walkers are paid $15-$25/hour (and as I’ve said before, I have nothing against pets).  I could list any number of roles or positions paid more than aides.  But here we’re talking about a person who often remains closest to a child who is struggling in school and needs the best (yes, I know … “appropriate”) supports possible, and are asking them to undertake herculean tasks for pennies.

For many children and teens with autism, learning disabilities, or behavioral challenges, their success – no, their ability to make it from 8 a.m. to 3 p.m. – is often dependent upon the support and expertise of a single person who is expected to work wonders while wondering about their worth.  As I’ve said about many things regarding the needs of children struggling in school, “it’s not a nicety, but a necessity.”  And this certainly applies to aides.  It’s not all about the money – many become aides to make a difference in the life of children, but when we’re talking about an adjunct to a child, we can and must do far better.  The success of our children in school and beyond depends upon it.

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Work Or Family…It’s All About Relationships

The similarities between workplaces and families are striking.

There’s the leader or the parent… unproductive staff meetings or holiday gatherings where few people are happy…employees doing more with less or limits on eating out… disengaged employees or family strife with teenagers.

If you really think about it, the one key difference between the workplace and the family is that workplaces pay their employees for the work they do whereas family members pay – in many ways – just for being part of the family.

I just read an article in Forbes entitled “Why Are So Many Employees Disengaged” and the research study cited concludes that the #1 reason is the relationship with the employee’s supervisor, costing employers $11 billion annually in employee turnover.  No surprise here, because we know that the attitudes and actions of the person/people at the top frame the experiences of everyone else.  Whether at work or home, it all boils down to the human level or, relationships.

When we look at top workplaces and companies striving for “best places to work” status, we often look at things like professional development, benefits or “perks,” or advancement opportunities as the core drivers.  No question these things help keep employees happy and may be easier to measure, but it’s the intangibles – often referred to as the softer, “feel good” things – that make for those workplaces and families we’d like to call our own or strive to create.

Relationships are built on people feeling listened to, respected, involved, and appreciated.  It’s sustained when everyone feels “part of” and knows – deep down at a personal level – that they’re a needed cog in the wheel to move things forward.  It’s not surprising at all that the key issue related to disengagement involves the relationships (or lack thereof) of the people who are most closely aligned.  Rather, the question to be asked is what’s being done to improve these fractured or non-existent relationships and is it a priority?

The workplace defines what people do.  Families define who people are.  Each revolves around relationships … more complex and harder to quantify, but enviable if you don’t have them and fortunate if you do.  Whether at work or at home, it’s the quality of the relationships of the people involved that makes all the difference.   As a proverb says, “No road is long with good company.”

It’s Halfway Through The School Year – So How Are Things Going?

January/February are typically brutal months – subzero temperatures, flu, snow days…everyone’s counting the minutes until spring.  But if you’re the parent of a child struggling in school, this time of year is about far more than the weather and health.  It’s the halfway point in the school year which often means that school struggles morph into full-blown crisis situations.

It doesn’t matter whether your child is in 4th or 11th Grade, whether your child has Asperger’s Syndrome or your teen has behavioral issues.  What does matter is that it’s time to ask yourself (and honestly answer), “How are things going?”  For millions of children, the answer is not so well.  And for the millions of parents standing behind their children, the realities are as harsh as the weather.  And these harsh realities impact everything – home, work, families.  Everything.

So now what?

If your child has not been evaluated yet is facing mounting struggles in school, now is the time to pursue an evaluation.  School can conduct it, but it’s best to pursue an independent evaluation conducted by a clinician of your choosing.  It often takes weeks if not longer to secure appointments, so after you dig your car out of the snow, start moving on it.

If your child is on an IEP and you have not reconvened your team since the school year began, it’s time to call a meeting.  Prepare to discuss goals and progress.  Prepare to bring any data you have collected (and yes, parents should be collecting data too).  Prepare to advocate for changes, whether to services or supports … whatever is not working needs to be reexamined.

If your child is on a 504, review all the accommodations to see if they are still appropriate now that half of the school year is behind you.  Make sure the school is actually implementing the accommodations as well and doing so consistently, particularly if your child is in middle and high school where multiple teachers come into play.

If your child is regressing, time to focus on data.  If your child is not making progress, yes…it’s “data time” as well.  It’s essential that you are requesting and gathering data from school, from outside supports (e.g. private tutoring, speech therapy), and that you are also providing data from home.  Remember that IEPs are not solely focused on academics – think social, behavioral, developmental, and functional needs as well.  So if you’re not seeing progress, whether within or outside of the school environment, this information needs to be shared with the IEP team.

Parents often focus on the here and now – makes perfect sense since if things are not going well today, it’s difficult to look a few years (or months) into the future.  Yet remember…the goal of an IEP or 504 is to help prepare your child for life after high school which goes far longer and includes far more than school.  So if things aren’t going well today, you still have half a school year left to make things right.  Or at least, better.

What Are People Thinking…Or Not

Maybe it’s just me, but I find myself shaking my head in disbelief at some of the words and comments that come out of the mouths of adults these days.  And to be honest, I ask myself,  “Who raised these people?” with increasing frequency too.  No, I’m not blaming parents for everything – I’m a parent too – but there’s no way *not* to question it sometimes.

Two weeks ago, it was a security guard at Whole Foods who told the sister of a young man with autism that he should be kept on a leash.  I was speechless.  No, I was fuming and wanted (still do) 15 minutes with this person.  And double that amount of time with CEO John Mackey (still do and have attempted the same).  I couldn’t believe that anyone would think no less speak such words nor could I believe that someone could even think this about another human being.

Last week, I watched a child staring at a slightly older child in a wheelchair.  The parent stood there and watched his child doing the staring, never bending down to quietly say, “It’s not nice to stare” nor attempting to explain to his child why the other child might not be able to walk.  It was the parent’s responsibility to capture this as a “teaching moment” vs. basically giving his child staring rights.  I wanted to take this on myself.

And today I just read about a situation whereby a family in a restaurant asked for their table to be moved because, “Special kids need to be kept in special places.”  This was regarding a child with Down Syndrome (fortunately the waiter refused to serve them – this man deserves a raise).   Can you imagine being the parents who overheard this statement about their own child?  Or being the child himself hearing it?  I’m still speechless yet close to foaming at the mouth with things to say.

I am not naive, but do know that adults/parents are role models for behavior and attitudes.  Children see and hear what we as parents do…the good and the bad, and this learning often translates into perpetuating thoughts and behaviors that should be extinguished.

I am not affixing blame, but rather assigning responsibility to those whose antiquated thinking requires an upgrade, even if it’s the thinking of a child.  If we as parents don’t understand something, we need to take it upon ourselves to learn.  And if we are unaware that our words are harming others, we need to be adult enough to let someone point it out.  Life is about learning and even old dogs can learn new tricks.

And I am not unaware that discrimination — blatant or otherwise — continues today.  But it’s the short and long-term impact of such attitudes that can destroy a life.  “Sticks and stones” has never been an accurate saying in my book.

Children, teenagers, or adults who are on the receiving end of bullying, discrimination, or worse deserve better.  Parents raising children with disabilities and special needs deserve better.  Companies who employee individuals lacking the awareness and sensitivity to treat every person with respect and dignity deserve better.  And we as a society need to demand better.  The phrase “stop and think” has never applied more or resonated louder.  Words that tumble from a person’s mouth can be weapons and we all know painfully well what weapons can do, don’t we.

The Juggle & Struggle Of Work/Life

The supermarket is a great place to tap into the pulse of people’s lives.  I don’t eavesdrop, but discussions often occur in such a way that I’m sure the people doing the talking must think they’re in a bubble and can’t be overheard.  I could write a book on the things I’ve heard while shopping for bread and grapes.

Standing at the deli counter over the weekend, I heard two women — who had not seen each other in a while — sharing their respective “tsoris” (Yiddish for suffering or hurt).  One was doing most of the talking about her elderly father who needed to move into an assisted living facility while her pre-teen child was going through different angst.  I could relate (and wanted to say so) since I went through the independent living/assisted living/nursing home/hospice nightmare with my own father several years ago while my child was dealing with bullying in school.  I could see in her face — and I only glanced quickly — that she was barely functional.

There was no way to know whether this woman was also working outside of the home but if so, her candle was not burning at both ends but was about to be extinguished.  Issues of this magnitude have a significant impact on the job.   Anyone who has a life knows all too well how family issues impact all else.  And because life isn’t linear nor do these life situations present themselves in succinct packages where you deal with one thing, complete it, and move onto the next, chaos becomes a way of existence.

Work/life is a “juggle and a struggle” but just as importantly, it’s not an either/or scenario.  While every employee at every life stage is dealing with different issues, one thing is for sure … it’s a rare individual who is facing just one work/life challenge.  Rather, issues often arise together or back-to-back, creating a push-pull ripe with conflict and forcing a rapid shift in priorities, all while taking a daily toll on the individual in every aspect of life.

A single person vs. a working parent.  Someone with medical issues vs. someone facing retirement.  An employee with financial pressures vs. one with elder care needs.  Every need and situation is different and “best” companies are constantly searching for ways to respond.  Yet it’s essential that organizations also recognize that it’s not an either/or scenario … that many employees are dealing with more than one issue and many times, more than one at a time.

Easing the pain requires a combination of solutions and an understanding that when one thing abates, another may quickly take its place.  Or that some issues are never discussed and fly under the radar.  Sometimes an employee can barely catch his/her breath before it hits the fan again and while the fan keeps on spinning, so does the employee.

There’s really no difference between the ebb and flow of business and the ebb and flow of life.  With one exception.  I’ve yet to hear anyone in the supermarket talking about profit margins or sales quotas, but do hear plenty about marriages, children, parents, divorces, foreclosures, and the need for vacations.  It’s not that people aren’t thinking about work deadlines and projects, but they’re certainly not discussing them at the deli counter.

Two Powerful Words…Mental Health

You almost have to be living under water not to be aware of the increasing volume about the issue of mental health and our youth.  Mind you, this isn’t a new topic particularly for those of us who work in any education-related arena or with children/teens, but since the tragedy in CT, the issue is now front-and-center.

Back in my college days, one of my journalism professors spoke about the power of words.  How one word can change everything … marital communications, business negotiations… everything.  How one word can create or shatter barriers, can alienate or establish understanding.   Just think about the power we have to change outcomes based upon words.

Which brings us to the phrase “mental health.”  While the word “health” is associated with visions of organic eating, exercise, relaxation, and long life, the “other” word does not have such positive associations.  With no disrespect toward anyone or anything that follows, we need to admit that there is baggage that accompanies the word mental.  Pre-conceived notions or reality-based or not, mental = sick, crazy, illness, unstable, disorder, abnormal, homeless, psychiatrists, drugs, hospitals, “One Flew Over The Cuckoo’s Nest” (for those old enough to remember)…you get the picture.  And when this word is associated with a child or teen — or your child or teen, it’s little wonder why many — parents included — hesitate to step over the line from denial to recognition.

The numbers of children and teens struggling with emotional or behavioral issues far exceeds any statistics.  They’re struggling at home, in school, and in our communities.  They’re struggling in elementary and high school.  They’re boys and girls.  Our children are not just slipping through the cracks — they’re cracking.  And the results to the child him/herself can be life-altering, devastating … or worse.

How many parents have heard things like:  “It’s a stage” … “He’ll grow out of it” … “All kids act this way” … “She just needs more discipline” … “It’s to be expected with ‘fill-in-the-blank’ — autism, ADD, learning disabilities, child of divorce, family history”.  These descriptions are often easier to accept than hearing your child has a mental health issue because it means your child is just like other kids (i.e. it’s a phase or stage).  Or it’s presumed that a mental health issue is just part and parcel of another diagnosis (e.g. autism).  Or that it’s an issue that will resolve itself over time.  Plus anyone who hears the phrase mental health quickly makes the leap to the “other” phrase — mental illness — and this just pushes buttons no one wants pushed.

We can spend hours on our broken health care system which often covers weight loss programs but not mental health coverage, or provides for 15 counseling sessions a year when a child in crisis may require 15 sessions over three weeks.  But the point here is that we need to strip away the barriers to the word “mental” because … until we begin to understand that mental health/illness is equal to medical health/illness … until we begin to advocate for equality in our health care system regardless of the category of need … and until we begin to push for early identification and intervention for our children, the phrase “mental health” will continue to wield the power that belongs with the resources and individuals who can help to close the gaping hole that is swallowing up so many of our children.

When It Happens To You, Everything Changes

This post is personal.  Very personal, in fact.   But if it helps one parent, it’s worth sharing.

I always believed that unless you experience something yourself, telling someone, “I understand” is like listening to a symphony without the strings section.  You can hear it but you can’t fully get it.  I was wrong.

Several days before Christmas, my young adult son went missing.  At first I thought it was just a misunderstanding…a mixup of where and when to meet.  But it quickly became far more.  Hours of social media attempts to make contact.  Reaching out to people — and people who knew people — day and night.  Walking the city streets.  Distributing flyers.  Contacting authorities.  It was a nightmare.  He was found unharmed on Christmas Eve, yet the scars from this surreal experience will last a lifetime.   At least they will for me.

There are thousands of parents whose children go missing every year.  Some are lost.  Some have been told to leave.  Some are confused.  Some are trying to figure out life.  Some are struggling to make the leap from child to independent adult.  Some are struggling with mental illness.  No matter the reason, each of these children has a parent or parents, many of whom are doing little more than breathing as they search for their child.

About a week before my life went into a four day tailspin, I was leaving a suburban shopping center around dusk when there was a young man holding a sign that said “homeless.”  I was sitting in my car, waiting for the light to change and found myself staring at him.  I just couldn’t take my eyes off of his face.  Mind you, this was an upscale suburban area where SUV’s and gourmet market bags of imported cheese defined everything.  Yet here was this young man, standing in the cold on a small strip of grass … homeless.  He glanced my way as I pulled some money from my purse and opened my window.  I handed him the money while looking into his eyes and said, “Eat something.”  He grinned and said, “I will, thank you” and then said, “Happy holidays to you.”  As I pulled away, I looked back to see where he was going and saw him headed to the market, likely to buy himself something to eat.

As I drove home, I couldn’t get him out of my mind.  Why was he homeless and why there.  What happened that had him without a warm bed and someone to care for him.  What would he do once the shops closed.  And then I thought about his parents.  Did they know he was on the streets?  Were they looking for him?  The entire situation had me twisted and distressed.  I felt guilty for that momentary rush of gladness I felt, knowing that my own child — around his age — was safe at home that evening.  Little could I know what was to come only a few days later.

So why am I sharing this.  It’s because we often talk about work/life and what takes priority given conflicting obligations.  It’s family…no questions asked.  Whether during times of crisis or not.  No matter what else is going on.  It’s family first.

It’s because we have a responsibility to our children.  Our own and others.  We are facing a societal problem unlike anything we’ve dealt with before and regardless of the reasons, the reality is that children — even if they’re 18, 21 or 28, are struggling and suffering.  Today there’s more stress.  Higher expectations.  Less certainty.  Many children are slipping through the cracks whether in school or out in the world.  And this includes children of well-intentioned, caring parents who believe they are doing everything right.

And it’s because we have a responsibility to not look away when we see a child who may be in need.  It’s difficult to know whether a teenager walking the streets at 10:00 on a weekday morning or a young adult sitting alone at night at a fast food restaurant may be in need.  But it’s not difficult to ask or to make a gesture, similar to the 26 acts of kindness to honor those lives lost in CT.  It’s really about being aware and a willingness to lend a hand.  Or a heart.

During our days of frantic searching, I encountered some wonderful strangers who quickly became more.  People who jumped without hesitation to help in some small way.  Their kindness was matched by their understanding — whether they themselves were parents or not — of what it must feel like to know your child is missing.  I used to think that you had to live something to truly get it, but I was wrong.  I now know that it’s really all about being human and recognizing that the adage “there but for the grace of God goes I” can apply to each of us in a heartbeat.